At HC-One, we support many individuals living with dementia, including Lewy body dementia (LBD) — a condition that is lesser-known, but still not uncommon, that can affect both thinking and movement.
According to Dementia UK’s official definition, Lewy Body Dementia (also known as dementia with Lewy bodies) is a progressive and complex condition that accounts for around 10–15% of all dementia diagnoses, but it’s often misunderstood or misdiagnosed, especially in the early stages.
For Lewy Body Dementia Awareness Week, we’re answering some common questions to help individuals and families feel more informed and supported.
What is Lewy body dementia?
Lewy body dementia is caused by the build-up of abnormal proteins — called Lewy bodies — in the brain. These disrupt how brain cells work, especially in areas that control thinking, movement, visual processing and sleep.
Symptoms can overlap with both Alzheimer’s and Parkinson’s diseases, which can make diagnosis more difficult without specialist input.
When was Lewy body dementia discovered?
Lewy bodies were first observed by neurologist Friedrich H. Lewy in 1912, while working with Dr Alois Alzheimer. But it wasn’t until much later — in the 1980s and 1990s — that Lewy body dementia was recognised as a distinct condition.
Where does Lewy body dementia start in the body?
Lewy body dementia starts in the brain. The protein deposits form in areas responsible for memory, movement, visual awareness and sleep.
This explains why early signs might not be memory-related, but instead include vivid dreams, disrupted sleep or changes in movement.
What’s it like to live with Lewy body dementia?
Everyone experiences dementia differently, but some common symptoms of Lewy body dementia include:
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Hallucinations (seeing things that aren’t there)
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Fluctuations in alertness or attention
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Problems with sleep, including intense dreams or moving around while dreaming
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Symptoms similar to that of Parkinson’s Disease, such as tremors, stiffness and shuffling
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Changes in mood, including anxiety, depression or delusions
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Memory difficulties, though these are often less severe than in Alzheimer’s
Sleep issues are particularly common. According to Dementia UK, up to 90% of people with Lewy body dementia experience sleep disturbances — much more than in Alzheimer’s disease. Some people may also develop Capgras syndrome, where a familiar person is mistaken for an imposter, which can be very distressing for the person living with Lewy body dementia.
How is Lewy body dementia diagnosed in the UK?
According to the NHS, there is no single test for Lewy body dementia. Diagnosis usually starts with a GP, who may ask about symptoms like confusion, hallucinations, sleep changes or movement difficulties. From there, they may refer the person to a memory clinic or specialist team.
Diagnosis might involve:
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A full symptom and cognitive assessment
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Blood tests to rule out other conditions
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Brain scans such as MRI or CT
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A SPECT scan (Single Photon Emission Computed Tomography), which can show patterns in brain activity linked to LBD
Getting the right diagnosis is important because people with LBD can be particularly sensitive to certain medications, including those used to treat hallucinations or movement symptoms. Careful medication management is key.
Treatment and support
While there’s no cure, many people live well with Lewy body dementia — especially with the right care, understanding and support.
Treatment may include:
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Medication to help with concentration, mobility or hallucinations (used carefully)
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Physiotherapy, occupational therapy or counselling
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Music, group activities or cognitive stimulation therapy
As the condition progresses, people with Lewy body dementia may need more day-to-day support than families can provide at home. This is where a care home can help. Moving into a care home can give families peace of mind that their loved one is being supported by a team who understands the condition, including its impact on movement, sleep and cognition.
At HC-One, our care teams work closely with families to shape the care we provide around each individual person. We take time to understand each person’s story, routine and preferences, so we can support them to live as well as possible, every day.
Further information and support
If you’re concerned about possible symptoms of dementia, the best first step is to speak to your GP.
To find out more about the dementia care and support available at HC-One, speak to our Careline team on 0333 999 8699.
You can also find further support from: